“Our Compassionate Leader”

There is something extraordinary about our eldest daughter, Caris.

Okay, there is something extraordinary about all three of my children, but our middle child exhibits two of my most favourite qualities. Compassion and Leadership.

Shortly after our son Carter was diagnosed with autism, our daughter Caris was born. It was as though, the joy of her birth was relevantly timed, to soften the blow that the autism diagnosis had carved in our chests.

I’m not going to lie. Maneuvering through autism while caring for a newborn was no piece of cake! She was a challenging baby, but I know now that her tenacious personality was the cause. The stubbornness she possessed, was her way, of trying to be in charge of everything. Even as an infant, she was a doer, which became completely apparent, the first time she shouted “I do-ed it myself” at me.

Some people may describe her demeanor as a little bit bossy, but I say, she is fiercely independent and a born leader!

Don’t ask me where the dominance comes from, because neither I, nor my husband possess it, but this little firecracker fit our family in such a way, that it felt as though she was chosen for us, on purpose.

She has always known how to relate to her older brother, Carter. I don’t know exactly how to describe it, other than to say, she just “gets” him. Even when he was unable to communicate verbally with her, she understood what he needed. No words were required from him. She knew exactly how to accommodate “play” so that it could include him, and she’d find a way to manipulate toys or the game rules, so that he could understand them.

It’s because of these inherent skills that she is often referred to as Carter’s “mini therapist.”

The other night, Caris was playing with her new Lego set, at the kitchen table. She asked Carter to join her, and he politely declined, but she was upset with his refusal. I explained to her that Carter has a hard time with Lego, because he has to use his imagination when building things, and that it’s really difficult for him. I said to her, that he’s not able to see creations, just by visualizing them, the way that she does. As much as he likes to play with the “finished product”, he gets frustrated when he has to build something without specific instructions.

I walked away to tend to our toddler, who was calling me from the playroom. When I returned, Carter was sitting at the kitchen table with Caris, building something out of Lego. I walked towards them, to see what it was, and Caris said to me “Mommy, I took apart my Lego ramp and sleigh, so that Carter could put it back together.”legoblog

This particular set was a day old, and highly admired by Caris. She had placed the box aside in the other room, complete with instructions, the day prior. She could have accepted his rejection to her invitation and continued on playing independently, but she didn’t allow for his limitations to prevent him from having fun.

Sure, as the parent, I might have come up with that idea myself, had I been given some more time to think about it, but I didn’t have to.

She had thought it up on her own, just as always.

Sara Park

Sensory Overload

I stand in a crowded grocery store, waiting for the cashier to scan my items.
Carter is here.

Waiting is hard for him.blogpostpic

He does his best, but the bright lights, the sound of the scanner, the buttons on the cash register, a squeaky cart, the chatter, automatic doors, now a baby is crying….it is sensory overload for him, and it’s too much !

Sometimes I can see he’s struggling, and I praise his efforts before an outburst occurs.

But not today.

He vocalizes a loud stim and hand flaps to counteract the noise that surrounds him.

It doesn’t go unnoticed.
It never does.

I’ve found it’s best that I don’t make eye contact with anyone when *it* happens.

I focus my eyes on Carter, and with no words exchanged, I can tell by looking at him that he already feels bad.

He did try.

I know he did….but it is so hard for him !

I remind Carter to have a quiet voice and calm hands.
I ask him if he wants a hug. Sometimes the pressure of a tight hug, helps to release the build up he is feeling inside.

I imagine it would feel like you are standing at a rock concert.
The music is pounding, people are screaming, your ears are ringing.
It hurts, but you can’t leave.

It’s that noise that makes your skin crawl, like nails on a chalkboard, only there is no chalkboard, it’s just your life, and you are surrounded by it all.the.time.

My heart sinks heavily as I try to contain the resentment I feel, towards the people around me.

Autism is an “invisible” disability.
The kids on the spectrum look the same as everyone else.
So naturally, people will stare.
They’re trying to analyze the situation, the child, I get it.
But it doesn’t make me any less angry.

It’s the “Mama bear” instinct times one hundred.

This is our day-to-day.

At the grocery store.
The playground.
The Doctor’s office.
Library.
Church.
School.

Everywhere.

Autism is a life long disorder.
Like most kids with ASD, this will always be a struggle for him.

Sensory processing and Autism go hand in hand, so even with years of therapy, he may never be able to adapt to his surroundings.

We put forth so much effort trying to change these kids on the spectrum, to make them adapt, when in fact, they may never be capable of change. And it’s not their fault, they are doing the best that they can, it’s just that for many, it is an impossible feat.

But we can change !

How you ask ? Stop staring, for one.

Have compassion. Children on the spectrum are not misbehaving, they are truly struggling with their surroundings.

A struggle beyond anything us “neurotypicals” can understand.

Every day is hard for them.

So please remember that the next time you see a child in a grocery store, or a Doctor’s office, or a library, that is having a difficult time.

They are coping the best that they can, and so are their parents.

Sara Park

All or Nothing.

photoALL OR NOTHING

Autism.
You’ve heard the word before, but what do you actually know about it?

Autism is a neurodevelopmental disorder that causes social impairment, difficulty with verbal and non-verbal communication, problems with sensory processing and repetitive behaviours.

Basically, it affects the way a person will think, learn and experience everything.

The latest statistics show that 1 in 68 children are on the Autism spectrum.
It is five times more common in boys, than girls, which makes the number 1 in 42 (boys).
As well, the numbers do not represent children under the age of 8, so as you can imagine, the numbers are much higher when you add those children into the equation.
My son turned 8 in August, and though he was diagnosed with Autism at age 3, he was not one of the 1 in 42 boys represented in the data.

With numbers this high, I would estimate that every second classroom has a student on the Autism spectrum.
If the number of children diagnosed with Autism, continues to rise, I would expect that every class will have a student with Autism, in just a few short years.

When I was growing up, the statistics were more like 1 in 10,000 children.
It was practically unheard of, which is why there are so many adults out there, that don’t know a thing about it. You may even be one of those adults!

A few years ago, my son (who has Autism), was in preschool.
His classmates were starting to notice that he was different than them.
They were asking questions about him, that no one really knew how to answer.
I wanted to help.
I wanted the kids to understand why he did the things he did, and I wanted to encourage them to be his friend.

So I wrote a poem.
It was essentially an “introduction to Autism” for preschoolers.
The poem was read to the children, and it was well received.
Questions were answered and the kids learned how to engage with my son.

That’s where the concept of “Clever Carter” began.

There is a growing number of children diagnosed with Autism every year.
How great would it be to have a resource for teachers and parents that could help to educate our children about Autism, starting as early as preschool?!
A kid friendly way to share some facts and commonalities.
A way to encourage inclusion and understanding of the disorder, from the very beginning.

The poem I wrote became a book, so that other teachers and parents outside of my son’s class, could use it as a teaching tool when educating about Autism.

We pre-sold 200 copies before they were even printed.

Resources for educating children about Autism are sparse, and the speed at which we sold the books, confirmed that.

That is my motivation.
That is why I’m doing this.

Today, we launch our Kickstarter fundraising campaign!

For those that don’t know, Kickstarter is an “all or nothing” fundraising site.
Meaning, if you don’t reach your goal in the designated time (36 days from today), you leave with nothing.
Nada. Zip. Zero dollars.

That’s a lot of pressure on a person!

Fortunately for me, I am well versed in “all or nothing”, because I have a kid on the Spectrum.
It is pretty much our way of life!

(And I like to ignite a little fire within me, from time to time.) 😉

Back to the campaign.
Our goal: to raise what we need to fund our second, much larger print.

That is where I need some help.

I like a little fire, but I am only ONE person.

Please share the campaign.
Everywhere. Often.

Donate what you can to help us reach our goal!

Thank you! 😀

vwp_parkfam05-ZF-1220-55032-1-001-005

Xo
Clever Carter’s Mom
Sara

Our Kickstarter campaign: https://www.kickstarter.com/projects/1067812886/clever-carter-a-story-about-autism?ref=nav_search

Resources:
http://www.ninds.nih.gov/disorders/autism/detail_autism.htm

http://www.medicalnewstoday.com/info/autism/

http://www.autism-community.com/autism-and-learning-2/

http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

“White Noise”

photo (2)I heard Carter crying out from his room at bed time, so I went upstairs to check on him.
I walked through the door and saw that he was covering his ears.
I said to him, “What’s wrong?”
“What’s the matter?”
He said, “My ears hurt”, (sensory), and continued to cover his ears.
I said, “Do you want me to turn the rain off?” (Which is the sound of rainfall from his white noise machine)
He said “On.”
So I asked, “Do you want me to turn the (ceiling) fan on?”
And he said “Yes please.”
I turned on the fan, and then I knelt down beside his bed.
With the night light of stars shining above us, I ran my fingers through his hair like I did when he smaller. I rested my head on his pillow beside him, and I gazed into his eyes.
I told him I loved him, and he whispered something back to me.
I asked him “pardon?”

He lifted his head, leaned in towards me and said “See you later Mommy!”

Which, in Carter lingo translates to, “Get the hell out of my room!”

“The same boy”

photo (4)

A year after we got married, we decided to start our family.
I got pregnant right away.
I was so body aware, that I knew we had conceived two weeks before I peed on the stick.

We were SO excited !
We were going to be parents !!!
We told everyone.
How could we possibly contain this information until week 12 ?!

9 weeks in, I miscarried.

Dreams were shattered, and our hearts were broken.
“Probably for the best”, I heard, “something must’ve been wrong with the baby”, and, “everything happens for a reason.”

All good intentions I’m sure, but to me it meant, “your baby wasn’t perfect, you wouldn’t want that one.”
“What a burden that would’ve been on your family.”

It was devastating !

I cried myself to sleep.
Many, many nights.

When we were ready to try for another baby, I became pregnant again rather quickly.
I was terrified.
We didn’t tell anyone.
We were cautiously excited.
As the 9 week mark approached, the anxiety of another miscarriage was too much to bear.
I broke down at my OB appointment and she arranged for an ultrasound to confirm viability.

One week later, we saw our little bean for the first time !
I instantly fell in love !!
You’d think the vision of our teeny baby on the screen was enough viability confirmation to put my mind at ease, but later that night I had an anxiety attack while lying in bed.
I couldn’t contain my tears.
The thought of losing another baby, was overwhelming me.
I pleaded to the universe to please let me carry this baby to term !
This baby deserved a chance, and I proclaimed that I would love this baby with every ounce of my being, “perfect” or “not”.
I longed to keep this baby.

The rest of the pregnancy went on without a hitch.

Carter, our first, was a dream baby !
My heart was bursting with love for him.
He was happy. All.the.time.
He was a good sleeper.
He transitioned to his crib with no problems !
He travelled well. In the car, on an airplane, it didn’t matter.
His two bottom baby teeth emerged without me even knowing.
He never complained.
He was so content and delightfully perfect !
It was like God had offered a condolence gift to us, for having suffered a loss.
Or at least, that’s how I saw it.
He was wonderful, and I felt honoured to be his Mom !

Just after his first birthday, we noticed he wasn’t meeting his milestones. The most prominent, was a speech delay.

We brought up our concerns with our Doctor.
Another 6 months passed and he wasn’t progressing.
We knew it was something more.

In April 2010, at 3.5 years old, he was diagnosed with Autism.
Before we left the specialists office, she said to us “Carter is the same boy you walked in here with, the diagnosis doesn’t change that.”

Those words resonated with me on the drive home.
She was right !
Well, sort of.
Our lives had just been turned upside down, and nothing was ever going to be the same.
Nothing, except Carter.
HE is the same.

The same little boy we walked in with.

The one I wished for and proclaimed to love with all of my being, no matter what.
And I did.

I still do.